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Stubborn red head

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Stubborn red head Apprentice
Stubborn red head
Posted

When I was 16, I had been in and out of hospitals for a number of reasons for two years. My mother and a team of doctors felt that it was worth a shot on the gluten-free diet I tried it felt good the first few weeks then got to the point that no mater how many Vitamins I took I was always tired. I worked at Wendy's and didn't eat there because of CC. I would still come home and sleep 12-14 hours wake up an hour or so before I had to be at work, only to come straight home and go right back to bed. We went back to the doctor and my pediatrician recommended that I go back on gluten, to see if I got my energy back. Of course my mother was outraged and got my medical records right then I never seen him again. I ended up moving to my grandparents and went back on gluten. I felt like a normal person again. My grade shot through the roof normally a C student I was bringing home a 4.0, working 20-30 hours a weeks and I was involved in two clubs at my high school.

Now its complete opposite. I was sleeping anywhere from 9-13 hours and couldn't hardly concentrate. Now gluten-free and 26 I feel like I am 16 again. I have energy to burn, I am more productive at work than ever, and I am sleeping 6-8 hours a night waking up refreshed... Whats the difference. Why now, what has changed in my body that makes such a difference.

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Bubba's Mom Enthusiast
Bubba's Mom
Posted

When I was 16, I had been in and out of hospitals for a number of reasons for two years. My mother and a team of doctors felt that it was worth a shot on the gluten-free diet I tried it felt good the first few weeks then got to the point that no mater how many Vitamins I took I was always tired. I worked at Wendy's and didn't eat there because of CC. I would still come home and sleep 12-14 hours wake up an hour or so before I had to be at work, only to come straight home and go right back to bed. We went back to the doctor and my pediatrician recommended that I go back on gluten, to see if I got my energy back. Of course my mother was outraged and got my medical records right then I never seen him again. I ended up moving to my grandparents and went back on gluten. I felt like a normal person again. My grade shot through the roof normally a C student I was bringing home a 4.0, working 20-30 hours a weeks and I was involved in two clubs at my high school.

Now its complete opposite. I was sleeping anywhere from 9-13 hours and couldn't hardly concentrate. Now gluten-free and 26 I feel like I am 16 again. I have energy to burn, I am more productive at work than ever, and I am sleeping 6-8 hours a night waking up refreshed... Whats the difference. Why now, what has changed in my body that makes such a difference.

I don't know if this is the case for you..but I had spells where my Celiac symptoms went into remission for a time.

This was many years before I was DXed with Celiac. I'd have spells where I was sleepy/exhausted no matter how much I slept, and then out of the blue I'd feel just fine.

I'd have spells where I had a lot of digestive issues and then they'd just clear up for a while too.

I know others have had these periods of "remission" too.

Victoria6102 Contributor
Victoria6102
Posted

Before I was diagnosed, I would be sick for 3 months and then feel ok for maybe a week( those were the best weeks of my life, that was when I remembered what it felt like to feel normal) but then sure enough the next couple weeks passed and BOOM back to being sick. That went on for five years before I was diagnosed. I can't eI plain why that happens to a lot of us though :P

Cara in Boston Enthusiast
Cara in Boston
Posted

I'm pretty sure I read somewhere that your symptoms can seemingly disappear for months or years, but the damage is still being done (internally) and you are still at a higher risk of developing associated autoimmune disorders. I was reading specifically about teenagers/young adults. People diagnosed as kids, then they cheat (must be hard to be gluten-free as a teen?) and feel fine so they conclude they must have been misdiagnosed. If you are still eating a regular diet now, perhaps you should consider blood tests and biopsy to confirm or rule out celiac disease?

Cara

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      By trents · Posted

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      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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